Saturday, August 28, 2010

Cardiology Appointment 27

Madison's journey continues to be successful as she just had cardiology post transplant visit number 27. (about 41 appointments since birth) Sometimes I just have to laugh.. that is a lot of appointments! Holy Cow! But I am also grateful; there are other heart babies who have had a lot more visits.Madison's appointment went well. We were able to meet the new cardiologist. I can't remember her name. Has anyone met her yet? She was nice, but I do miss Dr. Everitt. I get so attached and don't like change, especially when it comes to doctors. Although Maddie's appointment went well, it was during this appointment that I realized... she's officially 2! If there was a hidden camera in our room, someone was laughing pretty hard at us. Madison was into everything! I came prepared for her appointment.. I had a whole bag of toys, books and snacks packed just for her... she didn't want any of it. Instead she wanted to rearrange all the baby hospital gowns. Yes, the ones that are sanitized and folded very neatly in the exam table drawers. Madison is also going through a phase of taking all of her clothes off, including her diaper. She can undress herself faster than I can blink, so at one point, she was completely naked and rummaging through stuff. She also wanted all the band aids and binkies. For an entire hour, I was guarding the exam table like it was a hot stove, trying to redirect her. It was exhausting and all could think about was my diet coke sitting in my car. No laughing.. we ended up coming home with three binkies and a handful of band aids. I'm not even going to ask if we were charged for them. To give Madison some (small) credit.. we did have a 45 minute wait to see the doctor. And her cardiology appointments are usually about 3 hours long. In addition to a busy two year old and a long appointment, the lab messed up on Madison's lab order. Few things tick me off more than a lab tech that can't read doctors orders. It was over an hour wait for the IV team, so I took a deep breath and let the lab tech draw Madison's blood work. I even pointed to the exact vein that Madison prefers. Again, she didn't cry. It went well until they called Madison's name over the intercom at the hospital for us to return back to labs. Upon returning, I was told that they forgot to get her Prograf and Cellcept levels. What? Were they kidding? Those are the two most important levels for a transplant patient. I explained to them that I already gave her meds to her and so we would need to redo her labs the next day. And that is what we did. Dang it. I was ticked. Her labs have lead to more Prograf drama. Nothing serious, just transplant drama. Her Prograf level came back quite low. I've decided that if drugs are a gender, than Prograf is definitely female. Anyway since increasing her Prograf, she has broken out in a bumpy rash? Has anyone seen this before? It looks like goose-bumps. They are white little bumps; not red, but it is spreading. It started on her bum cheeks, thighs, stomach, upper and under arms. Today her ankles were covered and she has a few bumps on her nose. It's not very noticeable unless rubbing her skin, or looking for them. Maybe it's eczema?? I did call the transplant coordinators and they said it sounded like something Prograf would do and they did increase her dosage quite a bit. Maybe? I hope she's not allergic to Prograf... I really have no idea. They asked me to watch it and let them know if it gets worse. We have a pedatrician appointment on Monday, maybe he'll know what it is.. The good news is that it doesn't seem to bother her.

Darn the whole lab thing! That happened to Daniel once....sortof. THey drew labs and didn't get the blood in the right viles. So we had to go in the next day, too. Unfortunately this was when he still screamed and had to be held down for labs. Now adays, like Madison, he just sits there and holds his arm out. The prograf bumps, I have heard of that. Daniel's doctors said we need to watch for blistering and skin bumps or lesions. I have never see either. Good luck, though! Prograf is frustrating, huh? It's such a yo-yo ride!

Dates to Remember:

Madison

Miss Madison and her twin brother, Cooper were born June 10, 2008 at the University of Utah Hospital.Madison is diagnosed with Wolfe-Parkinson White Syndrome (abnormal heart arrhythmias) and Hypertrophic Cardiomypathy (heart muscle is too thick). Due to the Hypertophic Cardiomypathy, Madison's heart is unable to function properly. Currently, her little heart is working too hard resulting in the valves leaking and a few other symptoms.On October 15, 2009 Madison was listed for a Heart Transplant. She is listed as a 1B status.

UPDATE: On November 30, 2009, Madison was admitted to the ICU at Primary Children's Hospital for severe heart failure. We had hit our brick wall that Dr. Everitt explained might happen. Madison was pale, lethargic, and throwing up. Her liver was enlarged. It was obvious that we were heading in the wrong direction.Immediately upon being admitted, Milrinone (heart medication administered only through IV) was started. Madison also had to have a J-Tube placed (kind of like a G-Tube, but goes to the intestines rather than her stomach).At this time, Madison's status was changed to a 1A on the Heart Transplant List.On day 4 of being in the ICU, Mark and I were notified that a heart had become available for Madison. Our medical team believed this would be the perfect heart for our little girl.On December 4, 2009, Madison received the most sacred gift; she received her new heart. Thank you to our donor family. We love you.

The Day I Became a Heart Mom

One day my world came crashing down, I'll never be the same. They told me that my child was sick. I thought, "am I to blame"? I don't think I can handle this. I am really not that strong. It seemed my heart was breaking. I have loved her for so long. I will not give up on this child. I will listen to your advice. I will give my child any chance. No matter what the price. I will learn all that I need to help my child thrive. I'll even use that feeding tube. My child must survive!

Will she need a lot of therapy? Will she gain the needed weight? Please God, help me do this. I will accept our fate.

When the monitors beep at night, it serves as my reminder. How many parents would love that sound. Tomorrow I will be kinder. As another Angel earns his wings, I run to my child's bed. I watch her sleep for quite a while. I bend down and kiss her head. I cry for the parents whose hearts have been broken. I look to You wondering why? Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold her life, and guide us through each day. My mind says savor each moment she's here, but my heart begs, "PLEASE let her stay"!

From pacing the surgical waiting room, to sitting by her bed. From wishing for a good nights sleep, to learning every med. From wondering, "will she be alright?", to watching her reach out her hands. With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line. I look to them and smile. You see MY child is loved so much. I would face ANY trial. That scar I trace with my finger (It's the door to her beautiful NEW heart). God must have known how much I'd love her (Just as He loved her from the start).

A heart mom is always a heart mom. Now wise beyond her years. For those who have angels in heaven, our hearts share in all of your tears.

Every day I will try and remember, I was chosen for her (and no other). I will always embrace that beautiful day.......When I became a "Heart Mom".